- 37% of respondents have diabetes-related complications or comorbidities;
- 40% (mainly people living with type 1 diabetes) experienced Diabetes Ketoacidosis (DKA), a potentially life-threatening condition, mainly at the time of diagnosis;
- 75% of respondents do not discuss mental health & well-being as part of their diabetes care. Half of them would have liked to do so;
- 13% of adult respondents had no review appointment in 2022. One-third had only one appointment. All children had at least two appointments in 2022, with the majority having three or more;
- 46% of people with type 2 diabetes pay privately for their diabetes care;
- Respondents express overall satisfaction with their care but assess it “as rushed”, and highlight the long waiting lists or poor access to technology, or multidisciplinary teams;
- Noticeable differences in the level of care between Dublin-based respondents versus the rest of the country.
Diabetes Ireland launched the results of the first-ever survey highlighting the lived experience of people with diabetes in Ireland. For further information on “Accessing and Using Diabetes Health Services Survey 2023″ click here.
An anonymous online survey of adults with diabetes or parents/carers of children with diabetes was conducted between 16 January and 5 February 2023 via social media and standard online communication to ask about experiences of living with diabetes in Ireland. 517 people completed all sections of the survey: 230 adults with type 1 diabetes, 155 with type 2 diabetes and 12 with other types of diabetes, and 120 parents/carers.
Among adults, 37% reported they were already living with diabetes-related complications and comorbidities. Most commonly these were hypertension (high blood pressure – 23%), diabetes retinopathy (23%), hypothyroidism (17%) and mental health-related issues (14%). During their lifespan living with diabetes, both adults & children living with type 1 diabetes had experienced severe complications: 40% had experienced DKA, mainly at the time of diagnosis, which should be avoidable if diabetes symptoms were recognised early; and 45% of adults experienced at least one episode of severe hypoglycaemia – a critically low glucose level, which usually comes with unconsciousness and requires third party help and possible hospitalisation.
In terms of their ongoing care, the majority of respondents were cared for in the public system but 20% of people with type 1 diabetes and 46% of those with type 2 diabetes pay privately for diabetes care. Only 13% of adult respondents had no review appointment with their healthcare provider in 2022 with a further 29% having only one appointment. However, all children with type 1 diabetes had at least two or more appointments in the same period, with 67% of them having three appointments or more. Overall, respondents expressed satisfaction with their diabetes care but many highlighted the lack of time given to them by their diabetes healthcare provider and felt the appointments were rushed. The vast majority of respondents (88%) are under the HSE Long-Term Illness Scheme, giving them access to free diabetes-related medications and technologies plus free high blood pressure and high cholesterol medications.
Interestingly, when comparing Dublin with the Rest of the country, there were a number of noticeable differences in people’s daily experience of living with diabetes. More often, people with type 1 diabetes pay privately for their diabetes care if they live outside of Dublin (19% vs. 10%). Among people with type 2 diabetes, those from outside of Dublin were usually receiving their care in general practices (75% vs. 55%). People from Dublin more often were treated in outpatient diabetes hospital clinics (27% vs. 20%) or attended diabetes clinics privately (13% vs. 5%).
Among adults living with type 1 diabetes, those living outside Dublin were more often diagnosed with diabetes-related complications or comorbidities (41% vs. 35%). Among people with type 2 diabetes, those living outside Dublin more often had increased occurrence of diabetes-related complications or comorbidities (48% vs. 20%), mainly hypertension (40% vs. 18%) and mental health-related issues (24% vs. 15%).
Overall, the rates of technology usage (CGM) were very high and there were no differences between Dublin and the rest of the country with insulin pump usage also being similar. However, in open-ended responses, many people referenced very long waiting lists and difficulties in accessing diabetes-related technology, mainly insulin pump therapy, as well as difficulties in accessing specialist multidisciplinary team members (i.e. dietitians, podiatrists, psychologists etc.).
Generally, people rated their health and well-being as good, but one-third assessed it as fair, poor or very poor. 75% of respondents reported that they do not discuss mental health & wellbeing as part of their diabetes care with half welcoming an opportunity to do so.
Dr Kate Gajewska, Research & Advocacy Manager, Diabetes Ireland who led the research and undertook the survey analysis, said: “We regularly hear from people with diabetes about difficulties in accessing diabetes care services and new technologies across the country. However, we had no real data on this, so we decided to undertake this survey and provide an opportunity for people with diabetes to share their experience of accessing services and living daily with the condition. This survey is the first of its kind in Ireland, and in the absence of a National Diabetes Register and Clinical Audit, it provides very detailed information about experiencing diabetes care by those affected by diabetes in Ireland.”
Alongside the release of the survey findings, Diabetes Ireland is also launching its Pre-Budget Submission 2024 calling on the Minister for Health to set up a task force similar to the Cancer Strategy Taskforce to develop a 10-year National Diabetes Strategy to improve and standardise the delivery of care, access to diabetes services to improve the quality of life of more than 300,000 people living with diabetes in Ireland.
Cormac Devlin TD, Chairperson of the Cross Parliamentary Group on Diabetes said: “The economic burden of diabetes on the Irish healthcare system is now a major challenge for the government and the Health Service Executive. The high cost of diabetes is mainly caused by the treatment of complications, many of which could be avoided with earlier detection, greater awareness of symptoms, better access to newer treatments and diabetes technologies, multidisciplinary teams, including psychologists, and regular diabetes review appointments. Despite the positive ongoing work of the HSE and Sláintecare, there are still many gaps in current diabetes services, as highlighted by this survey, that need to be tackled strategically in order to provide optimum diabetes care to everyone in need.
Therefore, to improve diabetes care, we need to collectively act now and decide what future care for people with diabetes will look like. “The Cross Parliamentary Group on Diabetes agree that it is time to set up a diabetes task force of relevant stakeholders to develop a 10-year National Diabetes Strategy that provides vision, leadership, direction, goals and priorities, as well as identifying and securing the future funding required to provide optimum care for every person living with diabetes in Ireland. We know this will take some time but we need to be very forward-thinking in our approach to dealing with diabetes long into the future and the immediate setting up of a force will help us achieve it.” – added Mr Devlin.
Diabetes Ireland, alongside the HSE National Clinical Programme, is also calling for additional funding of €5m to enable more equitable access to continuous glucose monitoring (CGM) for people with type 1 diabetes. Professor Derek O’Keeffe, National Clinical Programme for Diabetes Lead said: “In line with international best practice, the National Clinical Programme for Diabetes is requesting a broadening of the criteria for the provision of a form of CGM to all individuals living with Type 1 diabetes in Ireland. Bearing in mind that many people already use CGM in Ireland, securing €5 million by the Government in the Budget 2024 will facilitate more equitable access and reduce disparities for those living with type 1 diabetes who have not availed of this technology yet, will help them improve their diabetes management, outcomes and quality of life.” END
For further information on “Accessing and Using Diabetes Health Services Survey 2023″ click here.
To view the Pre-budget Submission 2024, click here.